Irritable Bowel Syndrome

[Ernie]

Hi,

I went to see a GI doc today and he said that I have IBS. He also said that there is no treatment and no diet that I can take to improve my symptoms. I have constant GI pain, bloating, gas, diarrhea and nausea.

Does any of you have any experience with this disorder?

Is there any forum I can join to get more information?

Could I change my diet?

Thank for the information

[Sophia3]

Have you tried a GLUTEN FREE DIET!! takes getting used to but if your bathroom habits improve after a few weeks on GLUTEN FREE eating, there is your answer. I did not have G.I. problems but for bone pain and brain fog issues....tried the diet for several weeks with no improvement. If your problem is gut related, you can see drastic improvement between 3 days and 4 weeks depending on gut damage.

But you must be FAITHFUL to the diet to test it. Real Celiacs can not cheat as it makes them ill, in pain or a SLAVE to the bathroom..

I know a guy that ate that way and changed his life...he suffered years with GI problems and read about Celiac. He looks and feels better and is a fanatic about NEVER CHEATING.

He has since found out siblings are Celiacs. He has NO MORE PAIN or bathroom problems.

Good luck in dealing with this latest dx.

Many docs do not know about Celiac or consider it "so rare" they will not test for it and test are not 100% except for biopsy.

[lilsagestar]

I have IBS too, and it may or may not be the same as yours, but my doc says it spawns from Insulin resistance and intolerance to certain foods. When the digestive track is exposed to something it can't handle it spasms and revolts, causing the pains, cramps and whatnot.

There's a lot of trial and error that goes along with it, but you CAN find a diet that keeps you in relative comfort.

The way to start is to take a food group (I suggest you start with sugar as that can cause major problems) and go a week without eating it. If you notice a significant improvement, then you've probably found one of your triggers. If not, try something else (like diary - also a common activator) for the next week and see if that helps.

I can tell you that the most common things to cause someone with IBS problems is sugar (including natural/fruit sugar), dairy, red meat and complex carbohydrates. I've found that eating white meat and vegetables as a staple of my diet keeps me on the right course.

Also, if it turns out that sugar is your problem (meaning you're insulin resistant) start counting how many sugars you eat during the day. Unlike diabetics whose sugar levels rise and fall, people with insulin resistance usually have a set number of sugars that they can eat before the cramps kick in. For me, if I eat less than 35g of sugar a day I don't have any cramps at all.

However, if you're going to switch to sugar-free foods as a result (which are much better for people with IBS and actually help you lose weight) I'd watch out how many sugar alcohols you ingest - like sugar, some people can only have a certain amount before your body rejects it.

Like I said, it's a lot of trial and error, but you can find a diet that works for you. I hope you feel better, and if you need any more help feel free to message me.

[runningshoe]

I have been having GI problems as well but my dr thinks it is autonomic related. Doesn't it seem possible since the GI tract is controlled by the autonomic system and that cleary is not working right if you have pots? I have posted several times about this because I am trying to figure it out as well. I never had GI problems before POTS. Somewhere on this site it says that about 20% if pots patients have GI issues. Maybe it is a combination of a faulty system and food intolerance issue....

I think it is terrible that your dr said there is nothing that can be done about it. There is always something to be done even if it is just something simple! My dr said that if your bowel is overly sensitive and then you add in an irriatant that normally would not be a problem, you can stir up trouble. Everything plays a role, meds, drinks, amount and kind of fiber. etc. I have noticed that small meals, really help me. Rich fatty foods make me worse and things like nuts don't agree with me anymore. I am sure that you can find some relief.

[ajw4790]

I guess in the past I was told I may have this kind of an issue, but it was never pursued or treated very well. So, I do find this interesting, and actually have an appointment this week where I hoped to ask some of these questions.

I do think diet is supposed to help relieve symptoms, although the problem overall is not really supposed to go away. Hopefully through hints here and online research you can find some answers and relief.

Good Luck!

[JaneEyre9]

Hi Ernie--

Is there any chance you have gastroparesis? If you do, the diet for that is very different from IBS. So just checking-- did this doctor (or another) do any tests to eliminate other possible diagnoses???

Lina is right, there is usually always something that can be done to make you more comfortable. You will probably have to try a number of things before you feel more comfortable, but diet changes and supplements can most likely be used to increase your comfort.

I have had digestive problems almost my entire life. I lived with lactose intolerance for a long time before diagnosis. I also had IBS for a long time before diagnosis. I've tried many things to help my symptoms.

If you have true IBS, a fiber supplement once a day may help. Citrucel is the one I use because it does not create gas like other fibers. I mix the powder with a little water and juice, and it keeps me regular-- helps me avoid constipation, diarrhea, and cramping. It was a bit rough getting used to it at first, but after a day or two, my system was used to taking it.

I also, like lina, eat multiple small meals each day. Large or rich meals give me symptoms. You can experiment with elimination for dairy or gluten. Ultimately though, if you just have IBS, you will find what works best for you and what triggers your symptoms over time. (A food diary is sometimes a good idea.)

Please message me if you want to talk more about it.

Kristen

[sally]

Hi Ernie,

check out http://www.helpforibs.com

I went on this forum for some help in answering questions regarding UC but it's an IBS forum that has a little of everything on it. good ideas and diet things included on there.

good luck and feel better soon.

[yogini]

Hi Ernie,

I have mild IBS. I think the meds you'd be given would depend upon the symptoms you're having. My main symptoms are gas and reflux and I've tried various OTC and prescription antacids, as well as simethicone for gas. If you're having diarrhea, etc, I'm sure there are many other meds. There are also dietary changes you can try, which are probably better to try first before going to meds. In terms of foods that cause gas and bloating (broccoli, beans, etc.), I think there is good info on WebMD. Plain, bland starchy foods like potatoes and rice are really easy to digest and settling to the stomach.

You may also want to look into trying probiotics - good bacteria. I tried these recently and they seem to help with digestion. And I also agree with the suggestion of experimenting w/ cutting out wheat and milk products - this could possibly help not only with digestive issues, but with dysautonomia (or other chronic illness) symptoms.

[Ernie]

My Dear Friends,

Thank you for sharing your knowledge and experience.

When I left his office yesterday I was disappointed because I thought IBS was another junk disorder, like conversion disorder. But after researching the net I found out that since the 1990s it has changed status, it has now become a real physical disorder. So at least, this doctor did not take me for a nut.

Sophia

I have not tried a gluten free diet but I think it is worth the try. I have never been tested for that disease. I heard that the diet is bland but if it can make my life better I will do it.

Lilsagestar

I have too much insuline, hypoglycemia. I don't know if that means that I am insuline resistance? Maybe I should ask my endocrinologist. I notice that when I eat sugar, as well as date square I have heartburn. I also noticed that milk and chocolate causes severe cramps and diarrhea within 15 minutes. I will have to play closer attention to what I eat. I started to eat sugar when I went to the hospital at the begining of January 2007. Then I continued when I came back home. This might be one big problem also.

Lina

With a faulty autonomic nervous system everything can go wrong. I have 100 times too much adrenaline so my body overreact badly. But on th other hand I also have other disorders. So doctors cannot put everything into the POTS diagnosis. When we have symptoms we need to be investigated to eliminate other possibilities. I agree with you that there are things that we can do to improve our situation.

AJW

How did your appointment go?

Sally

Good site you gave me. I went to see it and I found some great information.

Kristen

I have not been tested for any GI disorder. The doctor just asked me my GI symptoms, my diagnosis, and my meds and concluded that I had IBS. I am disappointed that no test was done because IBS is a diagnosis of exclusion and it was given to me without any testing. I think I saw the doctor for 5-10 minutes. He even told me that I did not have a stomach ulcers (I had an endoscopy last year at another hospital and a picture shows it). He also told me that I take too many pills. Those are my BP and HR meds as well as my pain medication. He did not impress me at all. I just felt that he wanted to get rid of me as fast as possible.

I like the food diary. I think that this will help me pintpoint the triggers faster.

In a way I would like to see another GI doc to have proper testing and be reassured on my diagnosis.

In the meantime I will follow the advice you all gave me on the IBS and Celiac diet because those are the 2 disorders that my doctors have mentioned to me.

[Sophia3]

Ernie

The GLUTEN FREE diet is not bland, BUT some of the bread and pasta substitutes can be!

This is a link for good bread. I ate their brown sandwich bread..it's a little different but you can eat it without toasting it and it maintained it's shape.

http://www.kinnikinnick.com/

MANY GF breads fall apart easily and just are just plain GROSS. (Stay away from ENER G breads...gross and those do taste like wallpaper paste.

Tinkyada pasta is fantastic and I hear Trader Joe's store brand is good as well.

Pamela's Cookies are great for a sweet treat. I love her Ginger and Almond slice cookie (dark color, almost looks like chocolate but RICH Gingery taste) She also has a SPICY GINGER cookie but I never tried that. Her Chocolate Chunk cookies are good but most all GF stuff goes stale fast. So keep cookies double bagged in freezer (put out on counter before eating) and keep bread frozen in freezer and just a few slices at a time in the fridge.

Also you can go to Asian Stores and get Tapioca Starch, and Potato starch CHEAP compared to "health food stores". Also WHITE Rice flour made in Thailand is good for making a flour mix. Or use Pamela's Ultimate baking mix for making quick breads I would make cornbread using half cornmeal and half Pamela's Baking mix...I would add 1-2 tbls sugar or honey to bread to give it some zip.

The rice flours DO tend to not have the TASTE of wheat flours...so when I made cookies using Pamela's mix (Chocolate chip cookie on the bag) They were boring so I added toasted coconut to them and oatmeal (from a dedicated GF oats facility so there is no cross contamination problems)

So maybe that is where the BLAND reputation comes from. It DOES take getting used to. but my sister made pumpkin pie usiing a GLUTEN FREE crust that was DIVINE, so it is possible.

I also have a great GF one bowl chocolate cake mix if you are a chocolate lover.

I am sure many here that are still on the GF diet can offer tips but it will give QUICK results if WHEAT is an issue for you.

If you ENJOY DAIRY do NOT give it up at the same time as giving up WHEAT....if your GI tract acts up, after a few weeks on GF diet, THEN try giving up dairy.

It's nice to figure out WHICH of the two is the culprit.

Also, when I abruptly went from wheat foods to wheat free, I had some mild GI issues for a couple of days and some extra gassy problems. But that settled down after about a week or 10 days.

That's my tip for the day.

Also, just learn to use rice or potatoes for your carbs in a meal instead of bread..and spice things up as you wish and LEARN to read labels for the hidden GLUTEN should you try that diet.

[morgan617]

Ernie, I have a terrible time with my gut too. I have had a colonoscopy where they found ulcerations consistant with colitis or crohn's, but he refuses to say I have it. I have discovered that I have become lactose intolerant in about the last year. The thing is, it is somewhat constipating for me, so I do milk products when I have stools that are crampy and loose.

I haven't really found anything that helps much, but must admit I am a bit on the hypovigilant side when it comes to paying attention to what I eat and the consequences. The only thing I am fanatical about is salt. I never use it. The opposite of almost everyone else here.

You know with our potassium problems, it becomes even more restrictive and difficult to find things we can eat. If we can eat them with PP, then they affect our gut. If we shouldn't eat them, they are one of the few things that don't affect it. And going without food is not an option.

So it's a double whammy for us I think. I eat what I can and decide at the time whether it's going to be my gut or potassium levels that regret it....morgan

[jolineshope]

Hi Ernie,

I don't post here much, but do check in from time to time, and your post intriuged me because this has been an issue for me for many years. It has taken me along time to figure out how to control my IBS. I too suffer from the same symptoms as you. I have tried many drugs with little to no success. I tried every fiber drink and tablet available, but every one of them caused severe gas and bloating, even the ones that are not suppose to cause gas. I have been tested celiac disease, but it was negative. For me the symptoms were reaching a point of controlling my life. I knew I had to find something to help myself. So, I did alot of research both on the net and books. Then I got a hold of a nutristionist and we put together a diet that would hopefully work for me.

The first thing the dietician took out of my diet was lactose of any sort. (milk, cheese, ice cream, yogurt, etc..) I wasn't happy about it but within days my symptoms seemed to improve. However, this was not to be the total answer. So, we then removed all hard to digest meats and greasy meats. (beef, pork, lamb, turkey) once again things got even better, but again there was more to do. So, we removed all white flours and rices (I should also mention here that I was so bad that any type of fiber foods would send me into a tail spin so I already had eliminated wheat, and bran type breads and pastas and cereals.) Now I was removing all the white types of breads, cereals, pastas, baked goods as well. At this point I was almost normal, except for the burning and occasional heart burn. So, we took it a step further and eliminated complex carbohydrates and acidic foods like tomatoes, ketchup, oranges, lemons, etc.. My diet dwindled down to fresh veggies, fruits, chicken, and seafood. It was hard to learn how to cook food that was filling but with the help of my dietician I learned great recipes and very filling foods. Within weeks of doing this diet, I no longer had issues with IBS.

I also noticed with this diet that I had more energy, my skin looked brighter, I had lost all my fat and had gained lean muscle. I also no longer suffered from hypoglycemiea attacks. It has been three years since starting this diet and maintaining it and I can tell you that I no longer list IBS as a dx. I also am able to eat some of the foods I love without paying for them. Things like an occassional ice cream, or a piece of cheese layered on my chicken, a crispy cream donut, a candy bar, etc. The trick to this is, I only allow myself to have one indulgence every other day. the rest of the time I stick to my diet. I'm not advocating my diet to you as the answer, because it does take time to prepare the foods and it costs more to buy all fresh healthy foods. However, what I would advocate to you is to get in touch with a dietician or nutristionist. They are a great resource in helping you figure your symptoms and what may be triggering them. They can also teach you how to prepare your foods with better replacement ingriedients and recipes.

Here are some of the worst triggers for people who sufferr from predominently diarrhea IBS : lactose of any kind, fatty oils (vegetable oil, corn oil, etc..) , red meat, pork, carbohydrates, and fiberous foods. ( fiberous foods are great for people with predominently constipation IBS, but not for diarrhea IBS. because the fiber causes gases and scrapes through the GI tract pushing stool through to fast, which people with diarrhea do not need.)

I hope this helps you some. lastly there are drugs to treat both constipation IBS and diarrhea IBS. There are drugs also to help with the cramping and pain as well as the bloat. So, your doctor was not being truthful about that part. I hope you feel better soon.

Best wishes,

Joline

[jolineshope]

Ernie,

I forgot one more thing that is essential to any one with IBS issues, and that is stomach exercises, because it will help to tone the stomach muscles and help to coordinate the GI tract movements. This was emphasized to me by both doc and nutristionist. You don't have to do stomach crunches either. All you have to do is lay on your back and do pelvic tilts. ( you push your pelvis up while pushing your belly button down to the floor) Then keep your pelvis on the floor and lift your shoulders and head up while holding your pelvis down.You can also sit and twist from the waist from side to side. Then there is where you stand-up and lift left leg (knee bent) while bringing your right elbow to meet it, and vice versa for other side. Lastly lay on your stomach and and lift your shoulders and head up and back toward the ceiling while keeping your legs flat on the floor. this one you will feel it stretch the GI muscles and it may hurt at first but after a couple of days you will start to notice the difference. ( start with 10 reps once a day, and as time goes by add more reps or more times a day)These are a few exercises to try. One other thing is to massage your lower abdomen from hip to hip and massage from the left hip up over the belly button and down to the right hip. (you will be following the normal GI tract movement) This is to help stretch the colon and get it used to coordinated movement. O.K. I have written enough, I hope this helps some, I know it was amazing for me.

My best to You,

Joline

[goldicedance]

Ernie...I had been suffering from severe diahhrea for some 3years. It was determined that I was VitaminD deficient. With the ingesting of massive amounts of Vitamin D - 50,000 each week for 8 weeks and now 1400 per day, the diahhrea has pretty much stopped. Occasionally, I will have an urgent bout where I better be near a bathroom. I no longer feel I have to wear Depends if I have to go out.

Lois

[ajw4790]

Ernie, (and all)

Thanks for asking on the appmt. So, yeah today I had two appmts. and drilled them on a multitude of things! So, I asked about my past gastro. history and if she thinks it still holds true. She said that yes it sounds like I do have GERD and IBS.

So, I have been taking Prilosec for the GERD, it really doesn't seem to help me very much, but all the others have always been too expensive. I gave previously Nexium, Protonix, Prevacid, and Aciphex. They all worked better for me then Prilosec, but they were all like $70.00, so I went either with nothing or Prilosec. So, recently in trying to make things better I tried to work on some kind of better solution, and wouldn't you know the one insurance plan we were pushed into taking doesn't cover any of them, so they are all but Prilosec of course about $150.00 a month!!!

This is on top of the other seven meds! That all are pretty much going up in price (doubling or so!). So, UUURRRRGGGHHH!!!!

This leads to endless frustration!

It was this plan or the one where they didn't cover any of my current drs. Since, I am FINALLY getting some where I chose the drs. Can you believe I actually went in favor of the drs?

I also thought it was imperative to look more into this seeing how my grandfather just died from gastric hemorhage and esophogeal erosion. I didn't know the man, to know the details, maybe he did something he shouldn't have, but I saw it as an even further sign to take better care of myself!

Sorry for the bit of a vent! I don't have much other insight now unfortunately. But, yes IBS in general now is thought of much better then it probably once was, and it is not like as a figment of your imagination, or b/c anxiety etc. It has been given I think a lot of credit. So, I wouldn't feel patronized or anything (I think that is what you were saying you had thought.)

[Sophia3]

p.s.

Ernie

I am by NO MEANS pushing the GF diet on you (though it has helped many with GI issues I am told)

I meant to include this helpful link earlier and I forgot. Sorry

http://www.fastq.com/~jbpratt/recipes/alle...f/products.html

[Ernie]

Hi,

Just a quick answer, Sophia, don't worry. I don't think your pushing anything on me. I appreciate all the advice your giving me.

I appreciate as well all the advice you are all giving me. My symptoms are better already because I am already applying what you are telling me.

I'll get back to you on Monday.

Thanks

[Guest tearose]

What is the difference between IBS and "periodic gastroparesis"?

I was told I didn't have IBS but have periodic gastroparesis due to POTS.

Do most of us have one or the other?

Do doctors know how to tell?

just wondering,

tearose

[ajw4790]

Interesting question Tearose!

I have no idea, but am interested in what you find out!

[Ernie]

Hi,

Sorry to be late in answering. We are putting our house for sale and I have a lot of cleaning to do.

I went to see my hematologist today and he renewed my Procrit for another 4 months. He is amazed and proud of himself (because he knows that he is the first doctor in 3.5 years who accepted to prescribe me the Procrit) at my progress. He calls me the "Miracle Girl of Fatima".

Anyway, I have taken one element out of my diet. I know it's not something fantastic, it's cheezees. So, my pain in much less. I used to eat some every evening or every afternoon.

I haven't chosen which one I will take off my diet next but I already see a progress so it encourages me. I see my internist on February 1st so I will see what he has to say about the IBS diagnosis.

I have a home broker coming to evaluate our house tonight. It is a bit stressful.

Thanks for your help and support.